Stoma types: colostomy, ileostomy, urostomy, tracheostomy...

Hi, any forum members here who have a stoma themselves, or perhaps close family members who do?
Given my medical situation, I’m looking at becoming a candidate very soon—so I’m interested in hearing about actual experiences.

I also want to know how the intestinal surgery actually goes—the procedure itself and the recovery process. I’ve managed to dodge those questions until now... but seeing patients in my ward who are three times my age makes me realize I need to stop avoiding the subject and actually learn what this is like.

Any advice would be appreciated. Thanks. 🙂

Hey there, Carol Price6,
I’ve been rocking a stoma for almost three years now. I ended up needing it when I was 36 after dealing with some colon cancer. Man, that surgery is no joke... they have to go in from both the front and the back since they have to remove the anus entirely. Those first few days in the hospital are rough, honestly. But bit by bit, they start pulling out all those tubes and drains, and you just feel better every single day. You’re usually looking at about two weeks before they send you home. One big thing you've gotta watch is your diet for the first two or three months—you really don't want to risk any bowel obstructions. I actually had my procedure done at Mercury, and they gave me a full list of what's safe to eat and what's a total no-go.
Plus, while you're still at the hospital, they’ll walk you through everything regarding the ostomy bags—how to use them, how to order more, all that stuff. It’s really not scary; they're actually super easy to manage once you get the hang of it.
As for living with a stoma? Seriously, don't sweat it. Eventually, you'll get right back to doing everything you used to do. For me, life hasn't changed one bit... I still run, ride my bike, hit the gym, go swimming in the ocean, and spend time with my family and friends. Everyone who knows me knows about the stoma, and I’m not ashamed of it at all. At the end of the day, it’s the thing that saved my life.
Hope this helps even just a little bit.
Good luck!!!

Carol Price6, sorry if I'm drifting a bit off-topic here, but could you clarify what the actual nature of this work is? Like, what kind of job are we talking about exactly?

nimbletrucker132 said:Carol Price6, sorry if I'm drifting a bit off-topic here, but could you clarify what the actual nature of this work is? Like, what kind of job are we talking about exactly?

Do you mean the nature of my illness? It's diverticulosis... but since I'm way too young for this to be happening, the real issue is how much it's taken over—almost my entire large intestine is affected, except for the last few inches. Plus, there's the constant cycle of inflammation. It feels like there isn't a single day without abdominal pain anymore. The flare-ups have become a piece of cake at this point—unpredictable and seemingly unrelated to diet—though my lifestyle probably doesn't help. My job is high-stress and involves sitting all day, which just makes things worse for my gut.

Anyway, Daniel Morgan6, I wanted to ask about your diet now. Once you get a stoma, do you still have to watch every single bite for the rest of your life? Or will I eventually be able to enjoy a grilled steak, some cabbage rolls, or those delicious treats that feel like a distant dream right now?🙂

Hey there, Carol Price6!
Regarding food, I was super strict during those first two or three months, making sure I stuck strictly to the allowed stuff... but after that, I slowly started playing around with all kinds of different foods. Now? Man, I eat pretty much everything and in massive amounts! My stoma works like a dream, though I do steer clear of peanuts because they give me some nasty abdominal cramps...
The thing I really wanted to mention is that, given your diagnosis, you'll probably end up needing an ileostomy. If I understood you correctly, your large intestine is in pretty rough shape, and honestly, I have no clue what kind of diet works best in a situation like that. You might want to check out some websites run by patient advocacy groups or stoma associations, like www.ostomates.org (it's in English) or maybe even some US-based support forums.
Wishing you the best of luck!!!

Hi everyone. About two years ago, I was diagnosed with colon cancer—had to have my rectum and about 14 inches of my colon removed—which resulted in a permanent stoma. Honestly, even after all this time, coming to terms with the fact that I’ll be wearing a stoma for the rest of my life has been... quite the journey. Even though it's been two years since the surgery, there are still days when this thing just drives me absolutely crazy. If anyone else here is dealing with similar frustrations, I’d love to hear how you manage it all. Thanks!

I haven't seen much on the Health subforum regarding stomas or the specific challenges people face with them. I’m hoping that, in time, folks will start checking in to share their stories and why they had to undergo stoma surgery in the first place.

In my view, this topic should really be driven by those who have actually lived through the procedures and surgeries—people with real experience. It shouldn't just be about reading descriptions from people who don't truly understand what it's like to live with a stoma.

It would be great to share actual experiences and practical advice. Since health is a global concern, I'm sure there are plenty of people out there who would find this useful.

Personally, I know there are bad days and nights, along with plenty of hurdles. Of course, there are good days too, but then there are those moments you can laugh about later—even if it isn't funny when it happens, like at 3:00 AM or while you're out and nowhere near a restroom.

I’m about 9 or 10 months post-op. I’ve been through quite a bit, but I feel pretty well-prepared and informed, thanks to examples I've found on YouTube.

I did a little Googling to see how common stomas are in different countries.

Since I’m living in Australia with a population of about 23 million, there are roughly 40,000 people here living with a stoma.

Back in the States, where the population is much larger, we have millions of people dealing with similar issues. Through my extended family, I know that the availability of supplies is largely the same here as it is everywhere else.

I've noticed that most products are standardized globally. The only issue is that in some parts of the world, if people successfully undergo the surgery, they might struggle to find the necessary bags for waste collection.

I think there are many of us scattered across the globe—some closer to home and some very far away, like me—but we are all united by the stoma experience.

For those who haven't had one yet but might in the future, there is a massive difference between seeing a bag in a catalog and seeing how it actually works in real life.

I realize it might take some time for the stoma community to find this new PDF. Until then, I'll try to post some specific cases and relevant links.

"Stoma" is actually a Greek word meaning "mouth" or "opening."

Definitionally, an ostomy is a surgical procedure that creates an opening from the inside of the body to the outside.

For example:
A colostomy or ileostomy creates an opening through the abdominal wall to allow waste to pass.

A urostomy creates an opening on the abdomen to provide a new way for urine to exit.

And a tracheostomy creates an opening in the neck to provide an alternative way to breathe.

This is deeply personal stuff, and it's not always comfortable to talk about. Most people I know, regardless of their background, are aware that back in 2011 (it was a bit of a 70th birthday gift), I lost my right kidney due to ureter cancer. Three months later, I found out I had bladder cancer. After six months of BCG therapy and cystoscopy procedures, the decision was made for radical surgery. In November 2012, I had my bladder, prostate, and lymph nodes removed—another 71st birthday gift, I suppose. I'll save the rest for another time.

Tyler James5 said:Thread merged with existing one

Can someone please tell me where this "existing" thread is? I'm trying to click the link, but nothing is happening.

I am so incredibly confused and I really need some help!
Panic is starting to set in because I’m facing a massive decision: do I commit to a permanent ostomy, or should I push for the "pouch" option instead?
Here is the situation. I have chronic ulcerative colitis. They’ve removed about 70 cm of my large intestine, my bowel isn't reconnected yet, and I currently have an ostomy connected to my small intestine.
I want to know—how many of you, men and women alike, are living with a permanent ostomy? How do you actually manage daily life, and how did you come to terms with it?
As things stand, I’m leaning toward the pouch option. Honestly, I’d almost be willing to endure the pain and go through the whole ordeal all over again just to avoid a permanent bag.
But if I’m being honest? I’m terrified.
I just don't know what to do.
Will the pain after the pouch be manageable? I have no idea. I’m completely lost, which is why I started this thread—I just need a little guidance from people who get it.
Please, give me some advice. So many people have told me that living with a permanent ostomy is perfectly normal, that it's mostly a mental hurdle, and that you just have to find a way to make peace with it.
What should I do? How do I decide?
My doctors are actually leaning toward the second option. Since I’m young, they feel like I shouldn't have to settle for a permanent ostomy just yet.
Of course, there's a catch.
They want to save the remaining part of my large intestine to connect to the small intestine, but that section is severely diseased.
It looks like they might have to remove it entirely, and only then would they even attempt to create a pouch.
Please, give me some advice. I feel like I’m about to start screaming from the sheer frustration of it all!
Thank you to all the kind souls out there who take the time to offer advice!
And to the admins... My apologies if this topic doesn't belong here. I wasn't quite sure where to post it.

I don't know a whole lot about this topic, honestly—just wanted to jump in and say hang in there and stay strong

Kate Newman38 said:I don't know a whole lot about this topic, honestly—just wanted to jump in and say hang in there and stay strong

Thank you for the kind words🙂 because, honestly, I've been feeling pretty depressed lately.;

I’m not sure which hospital they have you at, but standard procedure for a UC surgery usually involves removing the entire colon and constructing a pouch from small bowel tissue, leaving about 4cm of the rectum that requires careful monitoring. Like I told you before, just follow what the doctors say and go with the pouch; give your body a full year to settle everything down. You can always revert to an ileostomy later if things go south. In my first surgery, they removed my whole colon, formed the pouch, and put me on a temporary stoma so my stool wouldn't stress the pouch and rectum while they healed. During my second surgery, they closed the stoma, and the pouch finally took over. There was a nine-week gap between those operations, and I ended up being out of work for exactly four months total. If your pouch isn't fully formed yet, you're looking at two separate procedures: the initial formation and then the final closure of the stoma.

Look, ironjackal60... I know you’ve walked me through all of this, but the panic is starting to set in. Everything is moving at such a snail's pace. I’m following the protocol over at Mayo Clinic... I'm listening to the advice. But the sheer slowness of it all on my end? It’s driving me a little crazy. I have to save this part of my rectum right now—that's where I am in the process. If I don't stop overthinking this, I’m going to lose my mind. So... I'm struggling.
The hesitation! This waiting is killing me.

Hi everyone,

My mom recently had her bladder removed to deal with some cancer, so we're currently navigating life with a stoma and ostomy bags. She started chemotherapy about a week ago, and we’ve hit a major snag—it feels like the bag can barely stay attached for an hour before it starts leaking. It seems like whatever the chemo is flushing out of her system is basically dissolving the adhesive right off her skin. Things eventually settle down after about three days, but those three days following the treatment are just a total disaster for us.

Has anyone else dealt with something similar? Or does anyone know of specific products or techniques for securing the bag to the skin during chemo that won't break down quite so fast?

Thanks so much, and all the best.

My mom actually dealt with the same thing after her oncology surgery—luckily it was only temporary, lasting about six months or so—she had a nephrostomy tube too.
It’s possible the placement just wasn't quite right from the jump; I suppose the best move might be to head straight to an urgent care urology clinic to have them look at it.

You just have to keep at it until you figure things out. I know it took my grandma about a year before her nursing home finally caught on to how to handle it.

They get everything they need from the convenience store right by the tram depot. They sent me over there once because they were in a huge rush for something, and the clerk was actually really sweet and willing to help out.

I am not entirely certain if the principle is identical to what we use for thick-walled hose setups—but if you are working with a tile and bag system, here is a little tip: try warming the tile with a heat gun before you set it. Once it’s in place, I'd suggest securing it further with some medical-grade adhesive tape from the local drugstore. Good luck!

My brother-in-law has been living with an ostomy for almost a year now after his colon cancer diagnosis, and he absolutely loves being out on the water. But because of the bag, he’s hesitant to go to the beach because he's worried about how it'll hold up while swimming.

I was wondering if there's anything specific we can buy or order online to make sure ocean swimming is safe and worry-free?

Everywhere I look online, people say you can totally swim normally with an ostomy, but for him, even the shower pressure makes the adhesive start peeling off.
My husband and I really want to get him to the coast, but we need to figure out a way to stop that lifting issue first.

Has anyone else dealt with this kind of thing?

My mom has been living with an ostomy for about four months now. She’s been dealing with constant leaks, which has honestly been pretty discouraging for her, but she’s finally started getting back into swimming. It’s helping her realize things aren't quite as catastrophic as they first seemed.

She ends up changing her supplies way more often than what the standard medical guidelines suggest, mostly just because of those leaks. But she’s come to view it this way: the official recommendations are basically flawed, because if they were accurate, people would need much more supplies provided to them.

I think maybe he's feeling some shame regarding the ostomy. I know my mom went through that exact same thing—that mix of embarrassment and just the general discomfort of having something like that attached to your body constantly. But you'd be surprised by how common this actually is.

Watching other people share their experiences on YouTube really helped my mom get through it, so maybe that could help him too.

It isn't the ostomy itself or even the leaking that's the worst part; I think it’s more that people don't want to feel like they've "failed," and now they have to deal with this cumbersome accessory that, let's face it, can be pretty unpleasant.

If he heads down to the coast and stays in one of those high-waisted swimsuits, it might help hide everything when he steps out of the water.

He should definitely try to get to the beach. It really helps; I see how much being near the ocean lifts my mom's spirits and gives her a bit of strength.

Cancer is such a cruel disease.